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Exciting New $10,000 Match for Oxytocin

In honor of PWS Awareness Month in May, the Prader-Willi California Foundation has initiated another challenge to raise funds to support the Oxytocin Phase 2 Study! Help us raise just $10,000 and PWCF will match it with another $10,000! That’s $20,000 more to ensure the Oxytocin Phase 2 Study progresses! We are grateful to PWCF […]

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A Massive PWS Awareness Campaign for Geneticists

PWSA (USA) had an awareness booth at the American College of Medical Genetics (ACMG) national meeting in Tampa Florida, March 8-12 2016. During this conference they had the first-ever symposium on a single syndrome (Prader-Willi syndrome) and had approximately 2,000 geneticists and genetic counselors attending. The symposium lasted 2 ½ hours with five speakers on PWS. What huge […]

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Research Announcement: Report on the Zafgen Meetings

Due to the results of the phase 3 clinical trial on the Zafgen drug beloranib, a meeting was recently held in Miami to review the data and meet with thrombosis experts. This was followed up by a meeting with PWS caregivers, many of whom had children on the clinical trial. As reported in the webinar […]

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ZAFGEN’S PIVOTAL PHASE 3 TRIAL OF BELORANIB IN PRADER-WILLI SYNDROME ACHIEVES CO-PRIMARY EFFICACY ENDPOINTS

Zafgen has released the results of the Phase 3 clinical trial of Beloranib in PWS (the “bestPWS” study). Note that PWSA (USA) and FPWR are planning a joint webinar in the next few days to review the findings and implications of the trial with the PWS community – more details will be available soon.   […]

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Help Us Learn More: Survey on Dangerous Condition in PWS

Survey: Vascular Blood Clots, Deep Vein Thrombosis (DVT) and/or Thrombosis in Prader-Willi Syndrome Our recent review of causes of death at PWSA (USA) has increased our awareness of the risk of death due to blood clots to the lungs/ pulmonary embolism’s(PE’s) in Prader-Willi syndrome. Additionally, there have been two PE sudden deaths during a recent […]

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PWSA (USA) Supports Two New Important Studies!

Calling all fathers! A study on the role of PWS male caregivers has been approved by PWSA (USA). Dr. Leon Caldwell has been awarded a grant to do a study on the needs and issues of PWS fathers and other male caregivers. The purpose of this study is to learn about the coping and parenting […]

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New Oxytocin Phase 2 Study Match Announced!

Thank you to our PWS community for responding to the challenge match announced by Prader-Willi California Foundation (PWCF). Donors responded by the October 30th deadline to activate the $10,000 match and the release of an additional $10,000 match to be provided at a later date by PWCF. We have raised $385,000 for this study that […]

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The Zafgen Clinical Trial Partial Hold

I would like to assure our PWS members that both PWSA (USA) and FPWR have been involved with discussions with Zafgen and the FDA regarding safety issues on the Zafgen clinical trial. A “partial hold” means that the study can continue with additional safety monitoring. We are in full support of the additional safety monitoring […]

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